e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Prepare for NEJM’s major web event on sharing research data next week
In November we posted about an extraordinary development: NEJM Data Analysis Challenge: can others create value by seeing researchers’ data? The project has come to fruition, and the big event (free) is next Monday-Tuesday. The question for us: What's the impact on...
Research & drug development news: European Public Health Alliance joins Europe-wide challenge to patent for Hepatitis C treatment
An announcement today in Europe (press release below) brings a new angle to the copious US coverage of drug pricing, such as predatory pricing of the EpiPen and the smirking, seemingly sociopathic Martin Shkreli. For the drug described below, the Médecins du Monde...
Service Agreements Among Friends and Colleagues
I'm an old hippie [left]. I've lived in many houses and on a farm (commune?) with other people. Regularly we heard, "I agreed to what? No I didn't." "Since when is that a rule?" I, and then my wife and I, developed skill in clarifying expectations and...
e-Patient perspective on evolocumab (that new cholesterol study): beyond the headlines
Please cite this post as "by Dave deBronkart, Marilyn Mann and Peter Elias MD" or, on Twitter, "@ePatientDave, @MarilynMann & @PHEski." Our blog software only allows listing one author but they provided 2/3 of the content. The medical news is abuzz - and your...
“Inviting the patient’s perspective” paper: today’s needs, 25 years ago *this week!*
March 1, 1992. 25 years ago. Yesterday I asked When was “Enriching the relationship by inviting the patient perspective” published? The words in that paper's abstract [right] could have been written today - literally every word. It was printworthy a quarter century...
Quiz: When was “Enriching the relationship by inviting the patient perspective” published?
Do not go look this up. I'll post the answer tomorrow. We on this blog know Dr. Tom Delbanco as, among other things, the "father" of OpenNotes, along with "co-parent" Jan Walker, RN MBA. (For a history lesson, Tom's also the lead author on the wonderful 2001 paper...
Dell Medical School and the Future of Care
In 2009, along with several physicians, patients and health activists, I helped form the Society for Participatory Medicine, a nonprofit promoting “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in...
Participatory Personalized Medicine in Action: Pharmacogenomics in Primary Care
This is a post by SPM Board Member John Hoben - Business Development Director at Bio-Optronics. Hoben’s passion is reconfiguring medical industrial complex assets and transactions from sickness response to true preventive delivery. This entails focusing on realizing...
Diabetes patient leaders: apply by 2/15 for fully funded #MasterLab Leadership Institute
Now THIS is what we call #PatientsIncluded. Twenty patient leaders will be fully funded to attend a new "MasterLab Leadership Institute" in the San Francisco bay area March 31-April 2. Click here (or the graphic above) to learn more and apply by next Wednesday, Feb...
Precision Medicine For Me (a new open collaboration) launches at #PMWC17
Today at 3 pm ET, at the Precision Medicine World Conference #PMWC17 in Silicon Valley, a new open collaboration called Precision Medicine For Me was announced, to help patients and clinicians everywhere make the most of the potential of precision medicine. Our...
Apply by 1/23: PCORI grant to fund e-patients at palliative care summit!
Intro note by e-Patient Dave: What a great development! CCCC is an organizational member of our Society, and last year we blogged CCCC conference announces inaugural class of palliative care e-patients, and now, even better news: e-patient participation is getting...
Angela Lundberg: Health Insurance & RA: Dangerously Uncovered
Member Angela Lundberg's blog article was just published for RheumatoidArthritis.net. It discusses the high out-of-pocket costs of health insurance for people who already have insurance. https://rheumatoidarthritis.net/living/dangerously-uncovered/comment-page-1/...
